Wednesday, August 6, 2014

I use a cane when my legs feel weak, or when my joints complain when I'm putting too much weight on them. I need to have it with me, because I never know when my legs are going to say, "Nope, not doing it anymore." I talked about the freedom the cane gives me, it gives me a feeling that I can be okay, I will not be stranded in the supermarket or downtown should my legs become ornery bastards.

There's a draw back though, people see me and they want to know what happened. "What did you do to yourself?" they ask. "Did you hurt yourself?"

Before this goes any farther, I know they mean well. I know they are concerned about me. I know they are coming from a place of love. Which is why I feel like a dick writing this, but these are my feelings at the time that they ask:

Me in my head: They are going to make me explain, my legs hurt, I need to finnish shopping, oh god they look so concerned. Why is it that I'm great if people are apathetic, but when they show general concern I feel all weepy. Don't cry in the super market Amber, they might hug you and that would be the dam breaker. Smile.

Me outloud: "Yep, it's hard to walk sometimes. But the cane helps out, I bought it at the antique store."

Me in my head: Please don't ask what's wrong, because I'm not sure what is wrong, I know what theory we are working on at the momentbut I feel like a fraud because there's so many other things we are looking at. I don't want to say we don't know yet, because that sounds so pathetically dramamtic. They are bound to ask more questions about my symptoms, my tests (insert images of tests and proceadures, nurse and dr.'s offices, bad mornings etc). Shit they are tilting their heads, not the empathetic head tilt, you guys are killing me here.Switch cane arms, this one hurts.

Them: "What's wrong though?"

Me in my head: Shit.
Me outloud: "It's looking like fibromyalgia."

Them: Gasp, Oh no!
Me in my head: SMILE. Explain that everthing is fine, you know lot's of people who have it, it's just about finding balance, taking breaks when you need it. Don't look scared, don't look upset and don't look like you are trying hard to look happy. Don't mention that it may be something else, you'll just have to explain that too. My legs are really beginning to ache now, I have to get moving, would it be rude to cut off the conversation right now? They are asking because they care but I'm tired and I feel so drained talking about this.
Me outloud: "It's okay, really. I have met other people who have it, they lead relitively normal lives, it's just about learning to read my body, to take a rest when I need to."

Them: "Oh, is it just in your joints?"

Me in my head: (immediatefull body and memory scan of where and how it hurts) I feel fuzzy, crap I don't even know how to put this into words.
Me outloud: "Ummmm, sometimes in my joints. It's really kind of everywhere. (that sounds aweful, not looking for sympathy, really) My skin sometimes hurts... like I'm bruised, and my muscles, they ummm get...achey, tired sort of." (I'm having a hard time finding words again, I'm getting tired, get out of this conversation before your stutter, Amber. It's so embarassing how they look at you when you stutter)
Them: "Oh, I'm sorry to hear that you are going through this."

Me in my head: I know you are, thank you for caring. My throat is tightening, Smile and be positive.
Me outloud: "Thanks, but it's really not that bad. I'll be fine. (smile). I'd better get shopping now."

Just to let you all know, again, I know that everyone who is asking me this is doing it out of love and concern for me. But it doesn't change the reality of it for me. Over the internet or facebook messages is easy for me, no one sees my face or hears my voice, I can answer at my leisure. There is no pretending and I can cry if I feel the need, in the privacy of my own home.

Yesterday was a bad day for me. I was exhausted, in more pain then usual and struggling with medical choices and possibilites. Stress makes it harder to cope with the pain, the fatigue makes it harder for me to form sentences. The more I stutter, repeat and start over my sentences the sadder I feel about the loss of my communication skills. I used to pride myself on my communication skills, well we all know what happens before a fall, don't we? Yesterday, a friend approached me and asked me about my cane. She is a good person, we've had many a personal conversation. I, however, was tired and weepy. So I just turned to her and said exactly what was on my mind, rather than drain myself with a conversation that I simply did not have the energy to keep myself positive for: "I don't want to talk about it right now."

She looked hurt. I didn't mean to hurt her feelings if I did. But part of learning to take care of myself, is learning to say "No." I was making myself feel obligated to do something that is draining for me. I am a grown woman, who needs to make choices that are best for her, I can't let the thought of someone else getting their feelings hurt, stop me from taking care of myself. Eventually, I won't feel guilty about that.

I love my friends and family, I know they want to show their support. I feel loved and supported. But if I seem aloof when you ask me questions in person, it's because it's painful and draining to talk about and frankly I don't know the answers. I hate showing emotion in public (other than cheerfullness), and somedays I am hanging on by a thread. Everyone wants to know how they can help, sending me messages is awesome, reading my blog to understand what is going on is great. Prayers are welcome. Perhaps, if you see me in the super market, you could just smile and act as if the cane isn't there, because normality is one of the greatest gifts I could recieve at the moment.

Tuesday, August 5, 2014

I went for my follow up for the sleep study expecting to be pressured into purchasing an oxygen machine for apnea. I even practised in my head how I would tell him that I was going to take stress reduction courses before I purchased one to see if that would help. That is not what happened at all.

According to my sleep study, my sleep was good, I had REM when I was suppose to, deep sleep when I was suppose to, I slept for a great amount of time, I moved my legs around quite a bit (but that probably has something to do with my pain) and I had very mild apnea otherwise he said I had a great night of sleep. The day tests however were concerning, day tests mean you get up for an hour and a half then sleep for 20-30 minutes, rinse repeat 3 more times, apparently I fell asleep in less than 5 mins or so each time and stayed asleep until woken. That is very rare, especially in someone who recieved a good night's sleep. The Dr. thinks that there must be something wrong in order for me to be that tired, he noted my extremely low iron and that, that may cause some of it. I talked to him about prolactin levels at night being higher and that I have begun lactating, does that mean anything to him as a sleep expert? He said "yes, it does." Turns out he was one of the main researchers that discovered that prolactin levels were higher at night (this is cool to someone who gives breastfeeding support). As such, he said he wanted to be the one to test for my prolactin levels, at night. He is concerned that the problem is in my brain, he asked if they have set me up for an MRI, I said "No." He said that he believed that the problem is central, that he will go for the more invasive proceadure if it means getting the answers sooner. He dictated a letter to my NP stating that he wanted to do a night-long prolactin level test, that he recomends that I go see an endocrinologist asap, and suggested an MRI. I'm pretty sure I know what he is talking about, he's concerned I may have a tumour on my pituitary gland, these tumours can grow and shrink and release hormones like prolactin. They can also put pressure on other parts of my brain and cause other symptoms that are not hormone related. These tumours respond well to oral medication and rarely need surgery or radiation treatment. He was vague though, in his explanation, which could have something to do with my kiddos who were sitting on the floor doing word searches.

Never walk in to a Dr.s office expecting something, it's like a slap in the face when it's not what you think it is.

Today is the day that I have to call and make my ultrasound and mamagram appointments and I'm really not feeling it. I feel like once I commit to these tests I am admitting that this may be more than low iron and a pain disorder. I don't want to do that. I don't want to make the calls alone. I want to be strong, it's easier to look strong and to sound strong when there is someone in the room watching me. My children make me strong, Scott makes me strong, I want to be positive for them. I'm so tired I'm finding it hard to be positive just for myself.

Truth of it is, it's time to put on my big girl panties. I don't even know if there is a tumour. I recognize that it is good to admit that I have fears and to not supress them. It's okay to admit that, yes, I'm tired. I know it's time to get this stuff done. Knowing that you are reading this is another way I stay strong, you are my witnesses, I find positive things to think and write because of you, I look for lessons so that I can pass them on, so that this whole experience isn't for nothing. So, thank you for being my sounding board, my support and my friends.